Shiannon's Story

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My name is Shiannon and I have a condition called Panhypopituitarism.  It is the result of a pituitary adenoma, or a prolactinoma, which was removed during surgery in 1996.  Unfortunately for me, a considerable amount of pituitary gland was removed during surgery or destroyed by the tumour, and what is left of the anterior pituitary does not function and I need to take replacement hormones to stay alive for the rest of my life.  This is a simple explanation of my condition.  It does not explain the symptoms that led to the discovery of the tumour, how I coped when diagnosed, and how I now cope with the ongoing problems and medical regime that the condition has created for me. 

<< From Left : Jennifer Wallace-{Founder of AGHDaware},   Shiannon Corcoran,   Donnell Davis-{Environmental Lawyer and relative of AGHD sufferer},   Julia Gillard-{Deputy Prime Minister}.

To tell the complete story could possible take up a ream of paper, and would almost certainly be as boring to some as it is interesting to others.  I will try and condense it, as every person’s journey through illness and how they deal with it is different, but hopefully, there will be something that you can relate to or compare with, and perhaps you will feel that you are not alone, that while there is a lot of despair and frustration, there can also be defining moments and empowerment through knowledge that makes it easier to cope and bring you to where you are today.  This is certainly how it is for me. 

When I was first diagnosed with my pituitary tumour, I was an extremely active person.  I had two jobs, which I managed to juggle between going to the gym, running five to ten kilometres a day and riding my motorbike for fun on the weekends.  To say that I was an adrenaline junkie would probably have been an understatement.  I enjoyed my life, was healthy and had a strong anti-drug policy, which included non-drinking and non-smoking.  My only problems seemed to be lack of a reasonably regular period cycle, a few headaches every now and again and some lactation –  for which I was becoming concerned enough about to get it checked by doctor.  Of course my prolactin was very high and I was sent off for a CAT scan and subsequent MRI, which showed a pituitary adenoma.

I was sent to the Princess Alexandra Hospital for endocrine treatment as a prelude to possible discussion for pituitary surgery.  I was treated with two different types of drugs to try and control or shrink the pituitary tumour, both of which I reacted badly to with symptoms of disorientation, extreme tiredness and constant nausea.  It was then decided by the endocrinologists and the neurosurgeon to schedule surgery to remove the tumour, and was considered successful, but rendered me with my current condition.  I now had to deal with my emotional state as I came to terms with the fact that I, the extremely fit and active person, had some major health issue to deal with. 

The side effects of the drugs to control the tumour had infiltrated into every part of my life and I had become tired, disorientated, depressed and frustrated.  This unfortunately was just a prelude to what I was going to feel after the operation when my pituitary functioning did not return to normal.  I had little family support at this stage because unfortunately, conditions of the pituitary such as these are not widespread or widely known about, and it was difficult for my family to grasp the medical ramifications of my situation as I looked so ‘normal’.  This look and subsequent reaction of my family was to continue for some years after the operation, as I still look normal and reasonably healthy, albeit a bit tired at times. 

It became difficult to explain my medical condition and why I was tired most of the time without looking like a hypochondriac or a whinger, so after a while I just gave up and tried to get on with it.  I was fortunate to have the support of my partner and now husband Michael, who had gone through a similar situation with his brother, who was diagnosed as having a large pituitary tumour ten years before me, so he was schooled in the art of the ‘cool on the outside under pressure’ look on the many occasions when I felt I could no longer cope with what was happening to me.  I found that there were various stages that I went through in regards to my emotional recovery, that appeared to be exempt, but in all likelihood magnified by my physical incapacities. 

Physically, I was still a wreck.  My once fit state had deteriorated, as I was no longer able to run, exercise and even a walk around the block with my dogs exhausted me. I found that I was no longer able to work in the capacity that I was used to.   In fact, for a while I was no longer able to work at all, as my body was not adjusting well to having the new drug regime of artificial hormones in place of my natural ones.  I lost my main job and did not have the energy to cope with my second job.  After six months I settled for part-time clerical work here and there just to feel normal, even though I was far from it, as the migraines and nausea persisted on a weekly basis for about 18 months after surgery. 

I would have to say at this stage, and anyone with adult panhypopituitarism would probably agree with me, that there is no substitute for natural hormones for the feeling of good health and wellbeing – and although I feel a lot better than I felt seven or eight years ago – that feeling of wellbeing is still as elusive today as it was just after the operation.  As far as my emotional state was, well, sometimes I coped, sometimes I did not.  I dealt with it at first by telling myself that I was going to get back to normal - this was just temporary and I would be running marathons again in no time at all.  This state lasted for about twelve to eighteen months as my body adjusted to the highs and lows that the drugs brought with it and the debilitating migraines that I experienced gradually dissipated. 

I tried walking and light exercise to begin with and tried to keep up the part-time work for a while as well.  None of this was to last, as I found I was unable to keep up and maintain any level of exercise or stressful activity for too long or I would end up in bed exhausted with more headaches.  No medical explanation was given as my drug replacement seemed adequate, but as I said, there is no substitute for natural hormones (as I was learning) and there seemed always to be something missing.  As I realised that I was not seeing much improvement, I started to feel angry with myself and my limitations, and the ‘reckless medical profession’ that had brought me to this point without fully explaining to me the very real consequences of surgery and post surgery adaptation. 

I remained this way for about six months and became reasonably antisocial for a time.  This had a great effect, on not only me, but my son, my partner and anybody who knew me.  I discovered who my friends were and who gave a damn – which fortunately for me was Michael, who I later married in 1999 in wonderful culmination of love and acceptance for who I was now, not who I was then.  I found that I could only live in this state of anger for so long, as the anger itself became very tiring.  Yes, I could not do the things that I once could, and I found myself exhausted and cranky on many occasions, but I started to make progress in other areas of my life that were less ‘physical’. 

I started Tafe College part-time at first to see how I would go, and then progressed to a year of full-time study for my certificate.  I then went onto another year of full-time study to get my diploma for my entry into university.  This all sounds very easy, but it was not.  It was exhausting, and there were times when I would spend days in bed and have to make up the lost days at Tafe at other times.  As I did a little bit more I was able to learn just how much I could do and how much I could get away with. 

At times I pushed the envelope a little and ended up in bed again, but at times I was able to surprise myself with what I could do.  When I finally finished my diploma of Multimedia in 1999, I was satisfied that I could actually achieve something regardless of my circumstances, and if I could do that, then why not go to university?  I was accepted into the University of the Sunshine Coast in 2000, and my next challenge was to move house with my husband and my son, study part-time and attempt a fertility program at a Brisbane IVF clinic.  Being infertile is one of the unfortunate side-effects of panhypopituitarism, but my fertility doctor assured me that she had had success with other women who had my condition, so we decided to give it a go. 

I had heard that the fertility treatment was difficult emotionally and financially, but I also had the physical side effects to deal with as my body readjusted itself to an influx of fertility hormones along with my usual regime of medications.  Looking back on it now I wonder how I survived the emotional highs and lows of the fertility cycle, trying to study at university and the disappointments of failure at the end of it all, and along with the physical effects as my body readjusted itself to my ‘usual’ medications again. 

One of the reasons that we moved back to Brisbane was because I had become so emotionally and physically ill from my fertility experience, it was recommended by one of the few endocrinologists on the Sunshine Coast that we move back to be close to medical help if I should need it in a hurry.   It was also recommended that I give up university for a while, but I dug in my heels and negotiated a six-month break from it with my husband.  I subsequently enrolled as soon as I could in the University of Southern Qld to study by online and correspondence, which would give me the freedom to study from home and look for work at the same time.  

I was still very tired, but I had recovered from the fertility treatment and was able to build myself up to working approximately 32 hours per week as well as continue to study.  I was very pleased with myself as I settled into a routine of a reasonably secure job and a study pattern that I could work my health around once again.  I went on this way for about 3 years, and was comfortable in my employment and successful with my university grades. 

A good deal of mental fortitude was involved in this however, as I was constantly exhausted.  My family and social life was almost non-existent as I returned home from work to study and fall into bed.  My fatigue was becoming worse and it was suggested to me during this time by my endocrinologist to try the growth hormone, to see if it would improve my disposition at all.  While I did not see a major improvement, as I was on a small dose, I noticed that I did have more energy to do things and more mental clarity for study during the time that I was taking it. 

I was coming along well, but due to financial problems over a six-month period, we were unable to afford the high cost of the medication, and consequently my health took a nosedive.  I was back to square one and almost gave up university due to depression caused by the debilitating lethargy that returned again.  The only thing that kept me going was the fact that I only had one more subject to go and I would have my degree, so I dug what was left of my heels in and went for it. 

The depression persisted throughout this period, and once again I have surprised myself with my ability to persevere in spite of it all.  I am left wondering if this is a new asset that I have developed or whether I had it in me all along and my medical condition has ‘brought out’ the best that I can be, regardless. 

They say that illness can often define and make you a better person, and I think that this is true in my case. 

I never really knew myself until I had to redefine myself again. 

Despite what I have been through these past 9 years, I have a lot more confidence in myself and what I can do with what I have. 

Some of my new confidence comes from proving to myself that I can finish what I start and achieve, regardless of what my ‘limitations’ may be. 

I finally finished my degree and will graduate soon (September 2006). 

I would say that this is a personal pinnacle for me and it shows just how far I have come in my life and my acceptance of my illness and myself.  I still get a little ‘high’ when I think about the ‘cap and gown’ thing, and I know now that I can do anything. 

I am now back on the growth hormone, and am feeling markedly better this time.  I will almost certainly feel the need for some new projects now that my studies are finished. 

I plan to involve myself in the push to get the growth hormone on the PBS for adults. 

I feel that this is very important for those of us that are deficient in the growth hormone, and can speak from personal experience without it for so long while trying to get my life back together and work and study at the same time.  I think that it may have been easier for me if the growth hormone had have been made available to me earlier on in my recovery, instead of discovering it’s benefits recently. 

I can sympathise with anybody that is going through a difficult time with a debilitating illness.  While I have come to terms with my illness and am successfully working around it and achieving what I want to do, I still have times when I feel that I am limited by all that it entails. 

I do have to be diligent and take my medications religiously in the right order and at the right time.  I have worked out a personal regime that suits me best, that may not be specific to the recommended ‘guidelines’ from the endocrine textbook of pituitary disease and treatments.  I have learnt that everybody that suffers from my illness is different and will be affected in different ways.  

I am an achiever of sorts, and will always push myself as much as I can before my body tells me to give it a break for a while. 

Not everybody is like that and some are probably a little more accepting than I. 

I still suffer from frustration because of the tiredness that can limit me at times, but I am now trying to channel my frustration into something a bit more creative, like my studies and some worthy causes, like more recognition for our plight and more action from the government. 

I guess the frustration and anger is a human response to the problems of a chronic medical condition, and my final acceptance of what I am and what I am not, depends upon having the grace to be able to take all that I have been through and use it to create some kind of awareness and confidence in myself, and perhaps help others along the way. 

 

This Page Refreshed: Tuesday, 06. November 2007

 

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This Website Created:  Tuesday, 01, August, 2006